Riley is 8years old, he was born in March 2004, a healthy lad. Though he had a seizure in October of that year, due to a raised temperature and spent the weekend at the local hospital. Prognosis was febrile seizures and as we recovered we went home. A few weeks later I was on Nightshifts and Riley had a prolonged seizure ending up in Alderhey Liverpool for a few days, again with temperature related seizures but this was a status episode and he required intubation, spending another 4 days in hospital, this seemed to be treading a path and we were regulars on the children’s ward at the local hospital, where we spent our first Christmas as a family as well as moving house.

Riley’s Pediatrician started him on sodium valproate on the Boxing Day, suggesting to help prevent ‘treading a path towards Epilepsy’. We were to spend a good 3 months of Riley’s first year in hospital. I can even remember as clear as a bell, him seizing on his birthday. The seizures became without fever and progressed towards varying types, though mostly tonic clonic and hemi clonic along with some focal and absences. Up and down with medicines and then we learnt to use rectal diazepam, which we’d gotten through plenty up to the summer of 2005. Then we had 3 months seizure freedom and thought it was all over and began to look forward but never spoke of it. Then bang, whilst on a trip to the seaside, exactly 1 year after his first seizure, another seizure in Blackpool. He had a status and had to stay in for 4 days to recover from his treatment. I can still smell the paraldehyde from that episode and his heart was struggling on this occasion, needing resuscitation. Back on with it and seizures became regular and a part of us again and he was added lamotrigine to his regime. This caused loads of problems and he began to have hundreds of myoclonics each day.

We asked for a 2 nd opinion and was referred to Liverpool where we had a second EEG and MRI , these were conclusive clinically of a likeliness to Dravet Syndrome, over the weeks we had blood tests done which confirmed a de novo mutation of the sodium channel. Another status seizure required ice packs on his chest and intraoseuss access with rescue medication again the smell of paraldehyde and the fear in the A&E physicians will stay with me. Riley having a seizure has even cleared a nursery school out for a day once. Think the worst event was when he got the chicken pox virus and cold sore virus, which even ted in us staying in a Ronald McDonald house in Liverpool whist Riley was in pediatric intensive care and hdu for 8 days and 5 in isolation room on a ward before we could come home.

As the year rolled we weaned Riley off Lamotrigine and started Keppra with sodium valproate again and we began to see an improvement in seizures by his 4 th year. They have further improved to only a handful of t/c’s and some absences this year 2012′ and we keep our fingers this continues to improve. Though we guard him like sentries when he’s ill as this is when he’s most vulnerable. Riley has moved through a couple of schools due to his difficulties and sensory/autistic traits though is learning well. He struggles with balance and focusing on tasks, though is very imaginative, associating the real world with fantasy. His vocabulary is quite good and he mocks accents very well. He loves camping with Dad and is very sociable with adults. He loves playing on the wii lego games and YouTube and has a fascination with lights, and fires!! often blowing bulbs and fuse boxes. Riley is also learning to swim, and last week he swam 3 strokes without even realizing he’d done it! He will swim by the summer, I’m hopeful of this. We’ve met loads of families through networking with Dravet Syndrome UK and go away to Sherwood Forest every year with them, there’s some great kids and Mums & Dads and a real value in friendships, especially when you kind of lose out to friendships closer to home due to increased responsibilities and priorities.

Riley loves Chicken Curry and Pasta Salad and is also a coca cola monster. But doesn’t eat sweets unless its fredo frogs or magic stars (cadburys chocolate). He also likes spring rolls.

We are hoping to get him into a youth club this year and attempt to socialize better with same age peers, it’s just his vulnerabilities which worry us. We like to have as much social experiences as possible. We went camping with The Oakhanger Project, a Christian outward bound group last summer, which has opened up opportunities and since we’ve been all over the north of England and Scotland camping in the summer.

I remember his Pediatrician saying to us when Riley was 2 and we wanted to go away, he said, “take the epilepsy with you, don’t let the epilepsy take you. It’s the 21 st century and as long as you don’t go pot holing in Central America or Botswana, you’ll be fine as long as you go prepared.” From there we’ve always gone on ahead of epilepsy and will continue to. Forever to support friends of Epilepsy and spread awareness.